essential lifestyle planning for everyone Michael W. Smull and Helen Sanderson

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1 essential lifestyle planning for everyone Michael W. Smull and Helen Sanderson with Charlotte Sweeney, Louise Skelhorn, Amanda George, Mary Lou Bourne and Michael Steinbruck

2 First published June 2005 Reprinted October 2009 The Learning Community - Essential Lifestyle Planning USA office M. W. Smull 3245 Harness Creek Road Annapolis, MD USA UK office 34 Broomfield Road Heaton Moor Stockport Cheshire SK4 4ND ISBN

3 Contents Preface 5 Introduction 7 Chapter 1 Person centred thinking 13 Chapter 2 Essential lifestyle planning 61 Chapter 3 Think before you plan 77 Chapter 4 Gathering information 93 Chapter 5 Developing the first plan 105 Chapter 6 The planning meeting 121 Chapter 7 Putting the plan into practice and ongoing learning 135 Chapter 8 Going from first plans to great plans 145 Conclusion 157

4 Acknowledgements Many thanks to the following people who made this book possible: Bill Allen, Gill Bailey, Julie Bray, Shelley Dumas, Lorraine Erwin, Ruth Gorman, Jo Harvey, Alison Short and Kim Williams. This book incorporates information from: Reviewing Essential Lifestyle Plans: Criteria for Best Plans by Michael Smull, Helen Sanderson and Susan Burke Harrison. 4 essential lifestyle planning for everyone

5 Preface Welcome to the second edition of the facilitator s handbook, a resource manual for those people who develop essential lifestyle plans. Since we first developed essential lifestyle planning in the late 1980s and early 1990s we have tried to continue to learn how to better develop plans that helped people who use disability services get the lives that they wanted. This edition of the handbook moves from a focus on plans with people with disabilities, to plans for everyone who wants one. As I write, essential lifestyle planning is being used with children and families, with people who have mental health issues, with older people and with people who have drug and alcohol issues. We are also seeing this work used in life coaching: it truly is for everyone. What we teach and how we teach changes as we learn more about what needs to be present in order to develop good plans that make a difference. Much of our latest learning is reflected in this workbook. Our cautionary note is that we continue to learn. This is a snapshot of a moving target. If you have the first edition, look for the new material in this edition. If you find this edition useful, look for updates. If you are using this workbook and it is more than two years after the publication date, look for a new edition. And if you would like to contribute to the learning please contact us. 5 While the workbook and our knowledge continue to change, our goals remain the same. We continue to seek ways to help people have positive control over their lives. We continue to work to learn and teach people how to develop plans that: Reflect what is important to the person (those things that contribute to happiness), account for what is important for the person and describe a balance that maximizes the presence of those things that are important to the person while still addressing issues of health or safety. Communicate what has been learned in a way that is positive, respectful and powerful. Communicate in a way that those who support the person day to day find that the information in the plan is useful in their work, that the information is easy to find, easily understood and tells them what they need to know. Begin as a snapshot of what has been learned and are used to record the ongoing learning.

6 Serve as the basis on which to develop action plans that reflect what needs to stay the same and what needs to change. By observing the outcomes of training that we and others have done we have also found that: Planning is a skill that, for most of us, requires structured practice with feedback. Developing good plans that are acted on within a system requires that most of those doing the day to day work and all of those who manage have formal training in person centred thinking. 6 We are beginning to learn how this changes the role of the facilitator. If you are to be successful in helping people get the lives that they want you will need to look at your role and the roles of those around each person. You will need to be a coach as well as a planner. You need to look for opportunities to help the person; family members and those closest to the person have lead roles in developing and then implementing plans. The material that follows will help you understand both the how and the why of developing and sustaining essential lifestyle plans. It describes the underlying person centred thinking skills and the alternative ways to start developing plans. It will provide you with structure for your learning on the training course, and as you practice. It is a resource to go back to over time, to look for tips and more detailed information. Always remember that writing a good plan does not automatically mean that someone will have a good life. A plan is just a structured way to record learning. What makes the difference is the thinking that is behind the planning. A good plan is any plan that is used to help the person on their journey toward a life that makes sense for them; a life that has a balance that works for them. That journey is determined through mindful listening, respectfully and powerfully organizing what is learned, and ongoing mindful learning. Use what is written in this book to help you with these efforts. If you do this work as it is described you will find that you are also on a journey. As you move forward with your learning use it but also share it. We invite you to join our learning community. Michael W. Smull The Learning Community for Essential Lifestyle Planning November 2004 essential lifestyle planning for everyone

7 Introduction A person centred plan is a means and not an end. The life that the person wants is the outcome, not the plan that describes it. Person centred planning is a process of learning how a person wants to live and then describing what needs to be done to help the person move toward that life. It is a description of where the person wants their life to go and what needs to be done (and what needs to be maintained) to get there. Planning may be accomplished through one of three different approaches: A person developing their own plan (gathering information and developing a plan with the assistance of a facilitator or family mentor). Family members developing a plan, with and for their loved one (this can be parents developing a plan for a son or daughter, a son or daughter developing a plan for their parent who is aging, or has a health condition requiring increasing support from others). A facilitator developing a plan with the person who uses services. 7 In this book we focus on the latter, facilitators developing plans with people who use services. There are resources and courses for people who want to develop their own plans, and for family members, and we will point to where to get this information later in this chapter. A person centred planning process is: Respectful. Where time and effort is spent to ensure that the voice of the person is heard. Where there is a focus on learning what is important to the person in how she or he wants to live, what is important to those who love the person, and any issues of health or safety (from the perspective of the person, rather than any service received or from a person s paid support). The resulting plan is a written description of what is important to the person, how any issues of health or safety and risk must be addressed, and what needs to happen to introduction

8 support the person in their desired life. The plan cannot be separated from the process. A compromised process produces a compromised plan. Beyond these common elements there is considerable variation. Some of the better known formal processes include: personal futures planning; PATH; Maps; essential lifestyle planning; and individual service design. Additionally there are a host of processes that have been developed locally. These local processes are often unnamed and usually are a blend of the better known processes. However, the label of the process is not an indicator of the utility or integrity of the plan when done well. 8 What unites all of these efforts is a commitment to learning what is important to people from the person s perspective and, where invited, from the perspectives of their family and paid support. There is also a common commitment to implement what is learned. They all require meaningful and equitable partnerships between the person, those who know the person, those who facilitate the development of the plan, and those who share responsibility in implementing the plan. Where careful planning and implementation have been done we have learned that: When we listen with skill and respect, we can learn what is important to each person regardless of their personal circumstances. Planning is a continuous effort; what people want tomorrow is different from what they want today. Plans that don t change, don t get implemented; they gather dust on shelves. Growth and learning occur naturally when people have the opportunities that they want, that are in keeping with what is important in their life. Many of the behaviours that we have labelled as non-compliance, or communications that we label as difficult, go away when what is important to people is present. People are able to take positive control over their lives as we learn to listen and trust develops. Building a network of relationships in the community occurs, but it usually takes years not months. essential lifestyle planning for everyone

9 An individual s ethnic, racial and religious diversity is respected and integral to the planning process, not a separate add-on entity. We have learned that while what is most important to people is modest, implementation is affordable only if we change the way we work. Unless we begin to give financial control directly to individuals rather than fund services, we cannot afford to implement plans where people are asking to change who they live with or what they do. We have learned that it is our own structures that are the barriers and that much of the reports of high cost reflect the rigidity of our responses. Person centred planning therefore provides an opportunity to listen to people, learn what is important in their lives and act upon this in partnership with their families, friends and where applicable, paid support. This can result in transformation in people s lives, in the development of future services and in communities. 9 The beginning of essential lifestyle planning Essential lifestyle planning began in the late 1980s, at the University of Maryland, where Michael Smull and Susan Burke Harrison were asked to help people who have a learning disability return to their home communities from institutions and residential schools. All of the people who we were asked to help return to their communities had been labelled as not ready for life in the community and their records supported this impression. Escalating interventions had not been effective. For many there was a cycle of placement and failure, and current referrals for community services had resulted in a thanks, but no thanks response. The written description of what we learned with each individual was called an essential lifestyle plan. What we have found is that developing an essential lifestyle plan is useful for anyone where it is helpful to: Discover what is important to a person in everyday life and what is important for a person in order for them to stay healthy and safe. Describe what you have learned in a way that is easily accessible to those who will help the person get what is important to them. introduction

10 Throughout the 1990s the use of essential lifestyle planning was extended to other people - to individuals living at home, to those using community services, to children and to older adults, and extended from learning disabilities to everyone. The beauty of this approach is that it is about people and real life. It does not begin with a focus on disability or distress. It is about human rights. In the last decade many people who misuse drugs and alcohol, older people, children, and people who have mental health issues have discovered and embraced this approach. 10 About this book The purpose of this book is to provide information to accompany facilitator training courses provided by accredited trainers. Current training in essential lifestyle planning entails two days of training in person centred thinking, two days of facilitator training and one or more follow-on days. The two day training in person centred thinking is a stand alone training that you should encourage everyone to attend. On the other hand only a small percent of those paid to support, need to know how to write plans and to go through the balance of the facilitator training. Those who do need to, come back together for feedback about what they have done, as well as support for what they will be doing. This book: w w w Is not a substitute for training. A book cannot replace the experiential exercises, practical demonstrations and opportunities to practice and get feedback, that are provided in training. The trainer will provide most of the examples and real life experiences, and additional stories and information can be found on the ELP websites. For information on accredited trainers see: Is written with an assumption that people have an understanding of the basic principles and values of person centred planning. The book and the training provide the practical techniques to put person centred planning into practice. essential lifestyle planning for everyone

11 Is for facilitators who are supporting people who may want a plan. There are separate manuals and courses for parents and family members, and for individuals who are leading their own plans. To learn more about these go to: w w w How to use the book After this introduction, the book begins with an introduction to person centred thinking, followed by an overview of essential lifestyle planning, what a plan looks like, and the process of putting a plan together. The remaining chapters will introduce person centred thinking and then walk you through each of these stages of developing a plan, providing you with a detailed description of the process. Throughout the book there are icons that refer you to other parts of the book for resources, to websites for further information or examples, or to illustrate success. 11 A final note This book reflects what we have learned and have been practising as it goes to press. Before too long we will have learned more and be doing things differently from what is described here. In the preface, you were invited to join our learning community. You can keep up to date through the websites. Please also keep us up to date with what you are learning, so together we can develop our understanding of how to enable everyone to have the lifestyle that they want, alongside their friends and families, and within their local communities. introduction

12 The icons used in this book w w w Icon 1 Further information and examples can be found on the two main, linked websites. 12 ELP Learning Community Helen Sanderson Associates Where other websites are recommended, the address will be next to the icon. 21 Icon 2 There is more information on this somewhere else in the book. There will be a page number within to the icon for you to go to. essential lifestyle planning for everyone

13 Chapter 1 Person centred thinking 13

14

15 Chapter 1 Person centred thinking This chapter covers: What we mean by person centred thinking. The skills and tools of person centred thinking. How and when to introduce each tool. For people being supported by services, it is not person centred planning that matters as much as the pervasive presence of person centred thinking. If people who use services are to have positive control over their lives, if they are to have self directed lives within their own communities then those who are around the person, especially those who do the day to day work, need to have person centred thinking skills. Only a small percentage of people need to know how to write good person centred plans, but everyone involved needs to have good skills in person centred thinking, in the value based skills that underlie the planning. There are a number of reasons for this. Teaching and supporting the use of person centred thinking skills will mean that: It is more likely that plans will be used and acted on, so that the lives of people who use services will improve. You will have a number of ways to get plans started. Updating the plans will occur naturally, needing less effort and time. Every style of person centred planning is rooted in a person centred way of thinking. It is made up of a set of value based skills that result in seeing the person differently and give us a way of acting on what is learned. Training in person centred planning is training in a way of thinking as much as it is in a way of developing a plan. Plans that work are developed in partnership. The facilitator is a process expert, as they know how to develop a plan. The person and others who know what should be in the plan are the content experts. In too many places the process expert has the responsibility of developing plans with a large number of people without the time needed to develop good plans. The plans developed satisfy the requirements of the regulators without making a significant difference in people s lives. The exceptions, the places where we see good plans chapter 1

16 process expert 16 planning partnership good plans that make a difference content expert content expert content expert essential lifestyle planning for everyone

17 that make a difference, are places where there is partnership between process and content experts. Within these partnerships those around the person (the content experts) learn some of the process expert s skills. They do not have to learn how to write plans but they do have to learn the skills needed to develop the information that goes into plans. They have to learn and practice a kind of mindful learning so that plans are continuously being used and updated. These are referred to as person centred thinking skills and in this chapter we will describe what they are and how to use them. All person centred planning requires certain core skills that are needed to write good plans. Each form of planning has a somewhat different set of skills and each form of planning requires that you be good at using those skills. It is not just the person who writes the plans who has the skills, where there are good plans that are implemented, the people who are around the person also know and use the skills. They do not need to know how to use the skills to write plans, they do need to know how to use the plans to better support the person. In essential lifestyle planning we have identified 5 basic skills with 7 tools. One way to think about them is in the following diagram on page chapter 1

18 Skills needed to support people supporting dreams supporting relationships community connecting 18 being mindful and recording learning working/not working the 4 questions learning logs matching staff and those using services recognising/sorting important to and important for: finding the balance between learning, using and recording communication defining staff roles and responsibilities essential lifestyle planning for everyone

19 Skill Tool 1. Separating what is important to A simple grid for recording what is learned. from what is important for and finding a balance between them. 2. Defining the roles and responsibilities The doughnut - looking at core of those who are paid to support. responsibilities; where to use judgment and creativity, what is not the responsibility of those who are paid. 3. Getting a good match between those A table to record the learning and who are paid and those who use techniques to structure the learning. the services Learning, using and recording how A chart to record the learning and people communicate (especially with structured ways to use the chart. people who do not communicate with words). 5. Supporting mindful learning. a. Sorting what is working and not working from the perspective of the person and those around the person. b. Using 4 questions to quickly and effectively record the current learning. c. Using a learning log to record what is working and not working. chapter 1

20 In the material that follows we will review each of the skills (and tools) and look at how you can use each of them. Much of your success in developing plans that make a difference in people s lives will depend on the degree to which those people who are around the person (and those who manage services) understand and use these skills. This is challenging in that these skills, while relatively easy to teach, are often not used by people in their daily work. It is vital therefore, that we help people both learn these skills and put them to use. 20 Since there is rarely enough time to personally coach any given group through the process of learning, practising and routinely using the skills, you have to find allies. You need people who will learn the skills and reinforce their use when you are not there. Encourage those with power and authority to provide training and support for everyone. Look for those who are naturals at doing the work and reinforce their efforts. The better those who do the day to day work are at these core skills, the easier your work will be and the more likely that plans will be implemented. The first skill Sorting important to from important for and finding the balance between them What do we mean? What is important to a person includes only what people are saying : With their words. With their behaviour. Remember that many people have lived in circumstances where they were expected to say what others wanted them to say. Where people are saying what they think we want to hear, we have to rely on listening to their behaviour. What is important for people includes those things that we need to keep in mind for people regarding: Issues of health or safety. What others see as important for the person to be a valued member of their community. essential lifestyle planning for everyone

21 The balance The idea of the balance between what is important to and what is important for a person is rooted in the human condition where none of us has a life where we have everything that is important to us and none of us pay perfect attention to everything that is important for us. All of us strive for a balance between them. Learning what is important to and what is important for has to be done before you can help find the balance. Everyone finds that what is important to them and what is important for them are in conflict from time to time. A way to illustrate this is to ask When you have a bad day, do you eat or drink something fattening? The answer from many people is yes. The next question is What would happen if you had not had a bad day but a bad year? Would you become a bigger person? Again the answer from many people is that they would gain weight. Finally ask What if we were tracking your weight and after it had gone up we came to you and said that we were putting you on a 1,200 calorie diet because of the weight gain. How would you feel - better or worse? Would you follow the diet? Most people answer that they would feel worse and would not follow the diet. 21 In this story people are using something fattening to comfort them after a bad day, day after day. The bad days are occurring because something that is important to them is not present (or things that need to be absent are occurring). Helping this person lose weight has to start with understanding why he or she is having bad days. Then, after helping the person look at what can be done to decrease the bad days, you can look at alternative ways for the person to comfort him or herself. What works for us and for those who we plan with is to look at both, and then try to account for what is important for, using what is important to people as the context. Why do this? This is the fundamental person centred thinking skill. What we have seen over the years is that nearly anyone in need of long term services, who is in circumstances where others exercise control, has what is important for them addressed while what is important to them is often largely ignored or seen as what is done when time permits. chapter 1

22 Those who are receiving services are often told that issues of health and safety should be important to them even when their behaviour says it is not. Those providing the services are told that issues of health and safety are paramount and the significance of what is important to people is lost. Any intervention or programme designed to address what is important for someone without taking into account what is important to that person, is not adequate and will often fail. Conversely, simply saying that we support choice and paying no attention to what is important for people creates an environment where choice is used as an excuse for doing nothing and as a result people may be hurt. Every programme and intervention must take both into account and strive to find a balance between them that works for the person. 22 Part of why those who work with people with significant disabilities must apply this skill in their day to day work is not just the presence of a disability but also the absence of control in critical areas. We should all be trying to help people maximise the positive control they have over their lives. This means that you are helping people find the balance between important to and important for that works for them. A balance that accounts for issues of health and safety but recognises that perfect health and perfect safety are rarely achieved and all of us address what is important for us in the context of what is important to us. Again this is a human issue, not just a disability issue. A physician who specialises in sports medicine knows that advice to an injured athlete must include alternative ways to stay fit as well as what exercise not to do. The presence of a significant disability (especially if it affects cognitive function) makes the effort more complex. But problem solving around finding the best balance requires that people first know how to consistently separate what is important to from what is important for. It also requires that they recognise what they do not know. Those who are paid are typically operating in crisis mode and may be looking for the quick fix, teams often assume that they know things that they actually do not know. Completing a simple one page exercise, as shown on the next page, causes people to stop and think about what they do and do not know. For many individuals, recognising what we do not know, and taking the steps necessary to find out, is a critical part of helping them move toward better lives. essential lifestyle planning for everyone

23 What is important to... What is important for What else do we need to learn/know? chapter 1

24 When to do it and how to do it This is a fundamental skill and you want to find and use every opportunity to teach and apply it. It involves asking three outwardly simple questions. (What is important to a person? What is important for a person? And what else do we need to learn?) Having people stop and think about the answers helps them determine whether they are taking both what is important to and what is important for into account and whether or not there are significant things that still need to be learned. People think they can do it as soon as they hear it, but we have found that they need practice and feedback. 24 To see if it is part of the culture of a given place, listen to the conversations. Do those who provide support use these or similar terms in their conversations? Are they describing something as important to or important for? Ask people if they think something is important to or important for? Do they have a sense for the difference between the two? Listen to see if those providing the support know when they do not have enough information, or the right information, or where there is something that still needs to be learned. Where people are struggling, have it wrong, or just need to stop and think for a moment, quickly sketch out something that looks like the diagram you see on the previous page and fill it out. If this work is new to people, it often works best if you do not ask the questions directly, but rather fill it out yourself as you listen to people talk. Then based on what you heard, show people what you have done and engage them in a discussion. If it is not new to them, have everyone participate in completing it. Where people appear to be confused and have placed something under a different heading than you would have, ask guiding questions rather than telling people that they were wrong. It also works better to do it quickly (taking 5 minutes or so when it is not a crisis) but often. Do not spend too much time or people may see it as taking time away from other things that need to happen. Do it frequently enough so that it will become a positive habit, but only when it will be seen as useful. Try to help people see that a brief pause to think about what we know (and don t know) is often helpful in figuring out how to support people. essential lifestyle planning for everyone

25 The second skill Defining staff roles and responsibilities What One of the most difficult skills to teach, but one that is critical for implementation, is creating clarity around the roles and responsibilities of those who do the implementation. You learned a way of doing this that is referred to as the doughnut (based on the work of Charles Handy). The doughnut is a tool that helps staff, not only see what they must do (core responsibilities), but where they can try things (judgment and creativity) and what is not their responsibility. When you are explaining the concept, the first diagram with the concentric circles works well, when you are using it the three columns work better. Why There are three broad reasons to use the doughnut: An absence of clarity supports a blame culture. 2. Staff need to know where creativity is and is not expected and within those boundaries to be creative without fear of punishment. 3. Where those who are paid know what is expected of them turnover goes down. You know you have blame culture when: Real responsibility is avoided. Thinking outside the box results in psychic decapitation (creativity is punished). When people try something that did not work and the response from co-workers is to cover it up or otherwise avoid blame (rather than looking at what was learned), not how to improve supports. chapter 1

26 Doughnut diagram Inside a person s life not our paid responsibility (domain of friends) Use judgement and creativity supports wanted and needed 26 Core responsibilities personality characteristics needed essential lifestyle planning for everyone

27 Core responsibilities Use judgement and creativity Not our paid responsibility 27 chapter 1

28 A strong blame culture kills creativity, distorts learning, and eventually drives out many of those you want to retain. Some aspects of blame culture are nearly impossible to avoid as looking for someone to blame when something goes wrong is endemic in our culture (just watch the news or read a newspaper). However, the effects of blame culture can be avoided with ongoing work. Part of that work is to create clarity about what is expected of each person in their day to day efforts. Where creativity is both safe and encouraged, and where there is clarity regarding where it is and is not expected, you begin to address another critical issue. 28 There will never be enough funding to provide people with all the things that are important to them. Where there is not enough money we need more creativity. We need the creativity of the person and everyone around the person. Where a strong blame culture is present, only those in senior management or licensed professionals are seen as being able to be creative. (A note of caution: while seeking more money is often a substitute for creativity, the presence of creativity will not address basic issues of under funding.) Where boundaries are clear you are also reinforcing one aspect of culture that is essential - accountability. Accountability requires that there is clarity in the boundaries of expectations. By holding people accountable for their performance inside those boundaries, the accountability culture is created. Using the doughnut helps provide a foundation for that accountability. Finally, clarity about roles and responsibilities helps with reducing turnover among the staff you want to keep. In any organisation there are paid staff who you hope will stay and those you hope will leave. Creating accountability through assessing performance within clear descriptions of roles and responsibilities is a key to encouraging those who should leave to move on. It is a cliché and a reality that bad staff drive out good staff. When someone feels that she or he has to do the work of a peer who is loafing or if they are being asked to do more when others are getting away with doing less then most good staff reduce their efforts or leave. Having staff who understand expectations and are held accountable for them, promotes an environment where good staff want to stay and ineffective staff are more likely to leave. essential lifestyle planning for everyone

29 When you should do a doughnut : When people do not know their core responsibilities. When people do not know where creativity is needed and encouraged. When people do not know what is outside their area of responsibility. When changes are made in how someone is supported. When organisational changes are made that effect roles and responsibilities. Whenever the people who work within an organisations are unclear about how to sort their responsibilities, the doughnut should be introduced and used until everyone is clear about the expectations for performance within their jobs. As someone s support changes, the responsibilities of the people doing the day to day work may change. As responsibilities change the description of what is core, where to use judgment and creativity, and what is not their responsibility should be updated. As organisations change their structures, roles and responsibilities may shift and the doughnut should be updated. While the emphasis is on the roles and responsibilities of those who work directly with the people who use services, the doughnut should be applied throughout the organisation. If accountability culture is to be dominant over blame culture, then this way of thinking has to be pervasive within the organisation. 29 How A completed doughnut that has been done well is very clear and very useful but it is challenging to teach. However, there are some tips that will make the teaching significantly easier. 1. Start with a specific role in a specific situation. You may recall that this was the method used in the training stories to help you learn to use the doughnut (e.g. You go out with Levi into the community after school. You are the person who helps Maude take her bath.) chapter 1

30 30 2. Complete (with those you are helping to learn) a what is important to, important for, and what else you need to learn before you begin the doughnut. 3. Only after you have done several specific situations should you do a global doughnut about supporting a person. If you jump to doing a doughnut about a person s whole life before people have looked at specific situations (or are very skilled) those participating will tell you that all they did is reformat the plan - it will not feel useful to them. 4. Use the same technique of going from several specific situations to the general when doing a doughnut with a manager or a licensed professional. The third skill Matching staff and those using services What The form that you see on page 31 is a simple way to record what is needed to give you the best match between those who use services and those who provide them. The most important part of this is the box where personality characteristics are recorded. Why There are 3 powerful reasons why every effort should be made to determine what a good match looks like and why every effort should be made to act on the information. The quality of the match is: essential lifestyle planning for everyone

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